Friends will be friends (3 years post treatment)

31st August 2021 marks my 3 year anniversary of my last radiotherapy session for tonsil cancer.

You may think this is a strange title, but one of the good things that’s come out of the last 3 years is we have increased our circle of friends through my cancer diagnosis. We’ve met up with quite a few of theses whilst on our travels in the U.K. this year which has been a bonus. I am still running along with Dani a few what’s app groups which we started. When covid first started it became apparent some people would appreciate our help.

A snap shot of John and I meeting up with friends old and new.

Just to give hope to anyone starting out or in treatment, if you would have said to me in the dark days of diagnosis and waiting for tests, that 3 years on I would have done the following, I wouldn’t have believed you; Travelled to the apartment for a total of 49 weeks (including almost 10 months of not being allowed out if the country). 7 U.K. trips mostly to Wales but also discovering the delights of Hadrian’s wall country in Northumberland.

Our step granddaughter Meg had another little girl Cordelia to add to Delilah and Penelope, plus get to see her married to Kaine. Our step grandsons Dan and Liam settle down in their own houses with their girlfriends Loreta and Lucy respectively. Also this September James our grandson starts his final year at junior school .Thankfully all the way through our daughter Nicola and her husband Mel have never treated me any differently, for which I’m grateful I am not a touchy feeling person, they were there when I needed them. None of these would have been possible without the excellent care I received from the NHS and not forgetting John my long suffering husband, who readily admits he no longer hears me say ‘my mouth is dry’ as he’s heard it all before .

What’s new with me; the fibrosis I started with in December last year, is now manageable on the rare occasions it appears. It still seems to be that preparing vegetables is the main culprit, so I tend to pass that on to John. Its the cutting action onions, potatoes seem to be the worst. Dry mouth it’s still there but no longer the Sahara desert type of mouth. Overall I would say 80% of the time I have a decent amount of saliva. Nighttime I still use 1/2 a xyimelt, plus odd sips of water. Food wise I doubt now at 3 years a spicy hot chilli or curry will ever pass my lips again. I have tried the odd sip of alcohol but for me it’s a no no, I get dry mouth straight away, so it’s water or an occasional Diet Coke.

One thing that I am still getting is burning tongue, this seems to be worse when I’ve had cheese (cooked cheese is ok) or yoghurt both of which are fermented. So I now limit my intake of both which is a shame as I adore cheese but needs must.

Talking with friends in what’s app group, at least 6 of them are experiencing cognitive impairments, for some concentration has gone, others find words don’t come out as quickly as they used to, and others experience short term memory loss. All the above are a late onset radiotherapy side effect. Luckily for me I am not experiencing any of them, I regularly do puzzles, sudoku, solitaire, reading and crocheting all of which I need to concentrate on, so maybe that helps, who knows. Everyone is different as we always say, the others are keeping a close eye on themselves and will repost back to the consultants.

That’s about all for now, so onwards and upwards to infinity and beyond. I will update blog as and when.

A few photos of this years uk trips and my greenhouse

The future of follow up – Today my coffee tastes like Christmas in Costa Rica

— Read on

Today I’ve copied a list from my friend Dani regards the future of head and neck referrals plus give it a look as things are possibly going to change in my opinion for the better

Head and neck collie ups are still following protocols back from the 1960:70 s era. Nowadays things are more patient driven , the way forward is possibly going to be a pet xf scan after one year then self monitoring with guidelines . Studies in feasible ways forward are ongoing.

Give it a read and follow the links.

Feliz Navidad

Well what a year that turned out to be! Last January as we were putting Christmas away we put a small box of Christmas things separately as we were going to fly over to Spain for Christmas. None of us had heard of Wuhan let alone Coronavirus, Covid-19 now it runs our life. So for our Spanish friends Feliz Navidad. As I type today London and the south East has gone into tier 4 no families can mix at all. Here in West Yorkshire we are tier 3 so will get Christmas Day with our daughter, son in law and grandson plus new puppy Cooper.

Smaller gathering than usual,nevertheless a good day was had by all.

What’s new with me ? I am now 28 month post radiotherapy. We returned from Spain on the 23rd of November straight into 14 days quarantine, which was fine, the rules are there to be obeyed. At the moment NHS dentistry not allowed for routine work, so had to bite the bullet and have taken a private dental plan out. It is more for my teeth as lack of saliva can and does create problems. I am usually seen every 3 month, but my last check up was February like millions of others. I needed one small filling so it could have been worse, so remember anyone going through treatment take care of your teeth. I also for the first time had a fluoride varnish, I am unsure about that but will see how I go, it wasn’t painful, but I found it hard not to have a drink for 45 minutes after it’s application.

Doing what we do best, riding our bikes, calling into local bars for a morning tostadas and coffee, generally living our life’s.

I am almost up to my pre treatment fitness, we cycled 1000km and we walked 400km a far cry from our first trip after treatment when I did 12km and walked to the car. If we hadn’t had a local municipality lockdown for our last 3 weeks we would have easily added to those totals. Theres always next year! Although we do think our next trip will need to be after we’ve had our vaccine, we are both in the 60-64 bracket so are keeping everything crossed for the Astra Zenica vaccine to be approved and mass vaccinations can start. Although I’ve had cancer and still in remission it doesn’t make any difference to our position in the queue but so be it. After this year there’s so many people who are no longer around to share holidays, we are lucky.

I have had my first face to face appointment,moats since February. It was with Miss Farrer who is a new ENT consultant, so it was the camera up the nose and down the throat, all looked good. Upon feeling my neck she commented that I have a small amount of late onset radiation fibrosis starting in my radiation side tendons, nothing serious, she will send me for physio don’t know when with covid-19. Next appointment will be a phone call, then the one after with the nursing team. I will be almost 3 years post treatment by then, so instead of taking ENT cancer consultants I will be seen at the cancer clinic so the consultants will be in the vicinity if I have any issues. Of course the conversation ended with any problems please get straight in touch the NHS is ready and waiting don’t delay in contacting. So anyone reading this please please don’t delay my type of Cancer is curable if caught in time.

John and I hope everyone has had a good a Christmas as they can given the current state of the world at this present time. At the moment we have everything crossed for the Astra Zeneca vaccine to be approved in the next few days and 2021 can be more of a normal year for everyone.

Remember When.

Hi the above song by Alan Jackson has become a favourite of mine and hubbies recently if you have Amazon music it’s worth a listen, we aren’t country fans but the words resonate with our current climate. I am using the song title for a different reason.

I like many others in remission have been on telephone calls with my consultant. My last face to face appointment was early February followed by 2 telephone calls in May and July. I rang last week to check when my next call would be as I was over due. Imagine my dismay when the lady on appointments informed me I was now on a general ENT pathway and routine appointments due to covid-19 were no longer being given. No amount of saying I was a cancer patient 2 years into a 5year check up programme would or could budge her. She said glibly sit down with a cup of tea and I will escalate this call to ENT and someone will call you back. Well I would be sitting here with a very cold 4 day old cup of tea if I hadn’t taken things into my own hands.

Below you will see the email I sent to my Macmillan nurse who very promptly rang us the next morning after she had instigated a zoom call with various people. Firstly she apologised for the way I had been handled and then thanked me profusely for writing about something they were aware of, but until patients complain in writing nothing can be escalated further.

I received a phone call from P.A.L.S (Patient Advisory Liaison Service) the same afternoon asking did I want to escalate my situation via the board of my trust to find out who and why, I said yes please. So now all cancer patients at my trust will be investigated if they have been downgraded. The reason I am writing this today is please do not take Covid-19 as an excuse for not getting the follow up treatment that we deserve and need. I have heard that many of you are not getting scoped, again I have been told my trust have started scoping as it’s the best way for the consultants to see what’s happening.

On a happier note we are over in Spain living our lives for a few weeks. I have found an insurer Staysure who for a small premium will cover for travel against Foreign office advise and have taken my tonsil cancer into account and I am covered.

So our motto One life live it still stands, I am walking and riding my bike, everyday the sun is shining. We are being sensible, avoiding any crowds, but to be fair our area is very very quiet. Masks are compulsory from the minute we walk out of the apartment and everyone seems to obey. Maybe it’s because the Spanish fines are hefty and the police do patrol.

As for an update on me, I can now eat lettuce, ok it needs mayonnaise but it’s an improvement. I do seem to have had a general improvement since I passed the 2 year post treatment mark,it does seem to have been a magic point for me. Plus to be honest my mouth is saliva wise in the daytime almost normal. If i do go dry I find quick chew of sugar free gum and sip of water remedies it. Nighttime I still use 1/2 an xyimelt and if I wake sip water, but nothing like the early days. So stick with it, it does get better.

This is me.

Hi the title for this post is This is me, taken from The Greatest Showman (Not that I am a showman); today 31 August I am 2 years post radiotherapy for tonsil cancer with several affected lymph nodes and yes here I am still living my life and riding my bike.

The first photo is me on holiday in Anglesey this week, the bottom one is last day of treatment, did I think I would feel any worse than that photo? If you have read my blog the answer you will know is yes, the first 6 weeks of recovery isn’t a place I would like to revisit.

I am still receiving emails from fellow sufferers which I am always happy to reply to. In these difficult covid-19 times it’s got to be much harder for anyone in treatment, they don’t seem to be getting the same support during treatment and recovery as I was lucky enough to receive, so please if I haven’t covered anything drop me an email and I will try to help.

What’s new with me, the general consensus is once we’ve reached the magic 2 years it’s highly unlikely for any reoccurrence so my fingers and toes are permanently crossed for that. The consultants also say what we’ve got at the 2 year point is usually as good as anything will get. I have been researching that point recently and the thoughts in the USA are now 3 years plus for improvements. Think I will go along with that one. Personally I do feel that I’ve made improvements in these last few weeks, saliva or lack of it at times isn’t always at the forefront of my mind. I know from asking John I no longer say 20 times a day my mouth is dry! Plus on Saturday we drove from Wales to home 3 hours without the need for a loo stop which is definitely progress. I was sipping water but not in copious amounts as previously. So I hope this gives people hope for the future, dry mouth unless you’ve suffered it in my opinion is the worst side effect.

I think the question I get asked the most is when will I eat normally again. This is often asked around week 6 of recovery. Honestly what is normal. Do I enjoy food? Some days yes I do, others it’s just fuel to get through the day. On our recent holiday I had carbonara for first time, I really enjoyed it. So yes I am eating but certain things are still difficult. Some meats noticeably chicken, pork and bacon. Lettuce of any type I think will be a problem for me permanently it just doesn’t want to go down. Sweet things are fine now I have to watch what I eat as weight is coming back on and if I ate the same amount of sweet things I did in first year I could foresee a problem. Fruit is a problem to me, apples, pears and most stone fruits I can choke on unless peeled and then not the easiest to eat. The good old banana and soft fruits are ok, likewise all vegetables are fine. I can eat chip shop chips or deep fried ones, but oven chips or restaurant chips nope so I just don’t order them.

To give hope to anyone struggling I have listed todays food.

Breakfast Weetabix ( or porridge) with blueberries and honey. Lunch home made red pepper and tomato soup with olive bread home made (At last I can eat better bread, ok only with soup but progress). Tea slow cooked lamb shank in red wine, buttery mash, carrots and cabbage. Snacks a banana then a yoghurt. I always have my treat of 2 squares of dark chocolate and some nights a packet if plain crisps. I don’t drink but that’s my choice I wasn’t a drinker before so it’s not something I am missing.

What’s next for me hopefully trip back to Spain to renew the lease on the apartment. Ride our bikes,walk and feel a little sun before winter sets in. I know Spain will be difficult,wearing of face masks is compulsory in all outdoor settings, only in your own environment,on the beach eating or drinking are you allowed to take them off. I don’t have a problem with face masks, I will do whatever is needed it’s just with still having limited saliva I still need to sip water but unless we go I can’t say how I will cope, As I have said previously I am still only phone calls for my appointments,again I understand why but in my next call I am going to ask for a face to face for my next one. I do not want to go a year without someone looking at my tonsil area and throat I don’t feel like anything is amiss but it’s the reassurance more than anything. Don’t get me wrong on each phone call it’s has been said if I feel like there is a problem I will be seen,

Onwards and upwards, and anyone just starting treatment remember it’s hard but it is doable.

When will I see you again ? (Doctor Doctor)

Since my last update a lot has happened to our world. I had my last face to face consultation on February 11th, there was talk of a virus in Wuhan province, the Diamond Princess cruise ship was docked in Yokohama but it all seemed unreal on the other side if the world.

For the first time since diagnosis day, my consultation was with Mrs Cruickshank, we hadn’t met since she briskly uttered squamous cancer cells, sorry better get a scope up the nose! She greeted me this time with nice to see you again you’re looking very well did you have an NG tube?So I replied yes I did, to which she replied “jolly good women do better than men in that respect”. So then down to business quick feel of my neck, no camera, just a piece of gauze around the tongue and yank. All looking excellent no reoccurrence everything looking nice and pink all healthy. See you in 10-12 weeks.

So we set off for our usual spring trip to Spain, looking forward to getting lots of cycling and walking in. Maybe the first clue should have been 2 hours from home, a text message from Brittany Ferry’s sailing delayed 24 hours due to bad weather, we carried on as hotel was booked for that night and too late to cancel. That night met up with friends Emma and Paul from Isle of Wight Paul had tonsil cancer 3 years previously, a friendship from the cancer U.K. site. Booked another night in hotel enjoyed a day in Portsmouth had coffee with Lori another head and neck patient who I met via this blog. There is a point to all this which I will address later. Then a phone call at 2000 ferry going now at 0100 so off to the port wasted a night in hotel but in scheme of things it’s only money.The crossing was pretty rough but arrived 27 February and drove straight to apartment.

Things just as we had left them. We managed a few bike rides then on 13th March we knew things were getting serious Spain went into total lockdown and over there lockdown means lockdown. Only one person out at a time and only for specific reasons supermarket chemist or bank. Luckily we have a balcony and a large sun terrace. We didn’t get out again as a couple until the 2nd of May (the day before we drove home) and that was only for an hour’s exercise, with the police patrolling the streets. During this time it had become apparent that cancer patients were beginning to struggle.

Instead of cafe con leche overlooking the beach its coffee on the ledge looking towards the beach from the sun terrace .

Through my blog, the cancer U.K. site and the Macmillan forum I have made many friends who today nearly 2 years on we are still in touch with, plus I made local friends via treatment in the radiotherapy waiting room which became a second home for 7 weeks.

I began to get a feeling when reading posts from new people that covid -19 was impacting on how fellow cancer patients were being treat. Not mentioning specific names but a few of us started our own self support group for a few newbies to help them in their experiences. Of course I am still maintaining activity on Cancer Uk and Macmillan sites. People really have suffered during this time, so my heart goes out to anyone reading this who have or are or just starting treatment I do hope my blog and links to others can help you.

Best advice I can give anyone is don’t be afraid the treatment is hard, the recovery can be long but it is doable. Support is out there, either on the forums,reading our blogs, sending questions only too happy to help where I can. Anyone out there don’t struggle, if pegs are not being offered due to risks associated with covid-19 there is always the NG tube, it’s not that bad, it saved my life. Painkillers; the clue is in the name, do not suffer, pain will always surprise you usually on a Friday night when you think everything’s going fine. So talk it over with your oncologist beforehand, make sure you have them either to hand or a prescription. There’s nothing worse on a Friday night than crying until Monday when you are next at hospital. Food supplements they do vary from disgusting to well disgusting, but once again get ahead, ask your dieticians for samples better to try them before you need them as the tastes do vary. Personally Ensures beat Fortisips marginally and vanilla or banana my preferences. So have some in ready for when you can no longer eat again. Get your dieticians to prescribe them.

What’s new with me? I never thought back in the early days and months of recovery that I would sit here and type these words my mouth feels almost normal. I would say there are moments in the day I would say that I have 95% saliva, nighttime I still use 1/2 an xyimelt. I regularly get 8 hours sleep wake for sips of water but not enough to disturb me. I can now eat a packet of crisps, this week I progressed to cheese and onion as well as plain! Meat is still an issue, some I can eat some I can’t , Rib eye is fine as long as it is rare. Now I can do home cooked mince again, another progress. Casseroles some days ok, pork unless it’s in sausages is too dry. Bread is ok toasted, or if a sandwich dipped into soup. Chicken is getting better, this summer I have managed to eat sweet chilli chicken thighs cooked on a b b q again progress. Chicken breast still too dry unless smothered in gravy. Most soft fruits I am fine with so that’s a big change from my last blog, most vegetables are fine, salads (particularly lettuce) are difficult it still sticks in my throat. I have tried a sip of wine and gin and tonic not ready for those. Not being a drinker before, not drinking is not a problem for me but I know plenty who can enjoy the odd tipple so don’t despair.

I started this piece with a trip to see my ENT consultant, so the above title is apt. I was due the 26th of May at Pontefract but due to covid-19 this was changed to a telephone appointment. It’s strange speaking to your ENT consultant as they can only go by what you say. This time it was Mr Gunasakharan my usual consultant, he asked about our trip to Spain. I asked how were all the staff and consultants coping, to which he thanked me for asking. As he said to me I am now in the 18-24 month period where reoccurrence is highly unlikely, but we hoped my next appointment is a face to face as it’s reassuring to hear the words from the expert it all looks clear. I did ask for a blood test for my thyroid checking this a a must for any head and neck cancer patient as at least 50% of us to on to developing thyroid issues due to radiotherapy. Its not a major problem, easily sorted by thyroxine. I went to Pontefract hospital which is a covid clean hospital, I was seen very promptly, in and out in less than 5 minutes, the hospital was very very quiet. Rung Macmillann nurse as per instructions for the results and all looking good, within normal parameters. So me being me I asked for the numbers for my records. Last year my T.S.H was a1.87 this year 1.68 acceptable levels 0.4 to 4.00 so ok at the the moment

I also want to add I was told even though I have had a telephone consultation if I had any problems to ring either the Macmillan team or his secretary we mustn’t get complacent,the consultants are trying to protect us as well as themselves ,but not at the expense of us worrying.We know our own bodies, and I wouldn’t hesitate if I needed to be seen in these difficult times.

I often get asked how’s my hair ? Proof that it does grown back

The question I get asked the most is what do I need to be ready for treatment. This list isn’t a definitive one but it helped me with a few additions from others:

Soft toothbrushes Curaprox Amazon.

Duraphat toothpaste prescription

Humidifier Amazon cool mist approx £25

Nebuliser my hospital gave me one

Boxes and boxes of tissues.

Lip balm (non-petroleum jelly)

These are all on prescription you may be given some, all or none

Gelclair for ulcers,caphosol mouthwash, difflam throat spray,co codomol 30mg/500.if you need it oramorph or a longer lasting fetynal patch, or longer lasting m s t morphine.Don’t be scared you are using them for pain not pleasure.neck cream I was given sobrederm many use Aloe Vera gel.Always ask your team avoid anything too scented keep it simple for baths and showers.Plus all the opiates do make normal loo functions difficult so make sure one day one of treatment either movicol or laxido is prescribed.Another point if you don’t qualify for free prescription s once you have a cancer diagnosis you qualify for free prescriptions for 5 years so download or ask for the exemption form in the meantime save all chemist receipts.You will end up with a cupboard full of the various lotions potions and tablets

Above all a positive mental attitude

Holding back the years.

Hard to believe on the 14th of January this year 2020 it will be one year since Dr Sen gave me the piece of paper with the words no sign of any FDG take up in the pet ct scan, which equated to no signs of any cancer in my body. Well a year has passed since I last saw Dr Sen, he now wants to see me on an informal basis once a year until I reach the magic 5 years. It was good to see him at Leeds cancer centre and he is very pleased with my progress and also impressed at how many views over 13,000 worldwide the blog has reached in the last year. We chatted about the rise in HPV driven cancers, as I am also noticing more people contacting me in the last 6 months. At any given time I have at least 20 people in varying stages of treatment and many more of us having successfully completed treatment and on the road to recovery.

One comment I did make was the fact that everyone who comments to me, all have the same gripe; why are they told in a matter of weeks you will start to feel normal, so here’s hoping the parameters will eventually be changed along the lines of some people may feel normal in a matter if weeks, many will take longer. Unfortunately it’s not a one size fits all recovery, there is no magic tablet we can take.

As for me I still have a 20 min lunch time nap most days, I have finished acupuncture treatments for now as I feel they did their job in kick starting things.

Going forward what’s next, well according to the NHS, when I reach 2 years post treatment, what I have with regard to saliva output, eating and general well being is normally as good as I will be. However recent studies in the USA are extending that period to 3 years so that will be interesting to see.

Top tips which I have put in earlier posts, but people keep asking for them.

Make sure you get prescribed Duraphat toothpaste which I need for rest if my life.

Find a soft toothbrush I use Curaprox 5400 individual bristles. amazon sell them.

A humidifier for bedroom I also found useful during and after treatment, mine was a Cool mist brand name again Amazon.

Your hospital should give or loan you a nebuliser, you can use plain boiled water if the saline dries you out, I used mine when mucus was at its worst up to 6 times a day.

Before treatment sets in and makes eating hard, try and bulk up, it’s almost always inevitable their will be weight loss, purely because it’s our mouth and throat area that takes a battering from chemotherapy and radiotherapy.

Ensure, Fortisips or whichever high calorie food supplement your dietician prescribes they aren’t nice but you do benefit from the extra calories. I started diluting them with water. Extra bonus you get extra hydration at the same time.

After treatment finishes keep a record of what you are eating and drinking it helps you and also the dietician. I was told I needed a minimum of 2000 calories and 2 or 3 litres of water in first year after treatment.

Dry mouth; sorry imagine your worst every hangover mouth! Well you may have that every day for a while but forewarned is forearmed. I still use half an Xylimelts tablet, pop it in your mouth before bed. It helps me to sleep so that I get at least 8 hours with odd sips of water during night. I get them online from the mouth ulcer company, just keep them away from pets as they are poisonous to dogs and cats.

My eating is almost back to normal now, I still can’t eat anything spicy, it may come back it may not. Don’t be surprised if your favourite foods have been replaced by things you didn’t like pre treatment it seems common among fellow sufferers.

What got me through treatment was positive mental attitude, cancer wasn’t going to define me and I would like to think that’s the case. John and I now look at it as a blip in our life. On a plus side we’ve made many friends and acquaintances through this blog and the cancer forums that I will continue to support as long as someone out there needs me. The blog will continue to be updated as and when I have something new to say or I have found out an interesting fact.

Christmas was a lot more hectic than last year, Christmas Eve buffet was for 13 of us and Christmas Day Lunch 10 of us all at our house.

See below for the tribe photo

How did I cope, well it was organised with military precision, lots of lists and some delegating. Food wise it wasn’t my best day, meat can still be difficult to eat Pork and Turkey just didn’t want to go down. Plus I started with a cold a few days before the first proper cold since treatment began in July 2018. When talking to Dr Sen he did say colds will linger longer due to immune system being compromised by the chemotherapy, so it’s a point to bear in mind. This year we both had the flu jab, I couldn’t have it last year due to pet ct scan not being until January, I wasn’t allowed to have any live vaccines.

Well what’s next for us: Spain is beckoning so will soon be back on our bikes.

Last Christmas

Well where has that last 12 months gone, quite scary I’ve just recently read last years posting and realise how far I have come. Last year I was happy to be eating relatively ok, it’s only when I read the article back I can see how I have progressed.

Don’t get me wrong I still have bad eating days, Thursday, Friday and Saturday this week was dire. But yesterday rib-eye steak, home made chips and roast vegetables including what is now my all time favourite aubergines. Today mashed swede and carrots, savoy cabbage and sausages cooked in a mushroom and Pedro ximenz sauce (closest I get to any alcohol these days). Thoroughly enjoyed both meals, although tomorrow may be a different tale.

Weight wise I’ve put on just over 7 pounds from last Christmas, which is fine I have now stabilised. Thanks in part to cycling and no longer eating adult sized portions most days.

John and I would like to wish everyone a very Merry Christmas and a healthy and happy New Year, especially all the wonderful NHS staff who work so tirelessly day after day including Christmas.

The blog has now had over 14000 views from all 4 corners of the world and many of you have passed comments back to me. I hope I have replied to each and every one of you and many of you still message me for hints and tips, which I am only too pleased to help. Ok we are all different and progress at differing stages but hopefully we all get there in the end.

Christmas last year due to family illness was a quiet one, just John and I with an Aldi turkey roll. This year we have 11 family members for Christmas Eve tea and 10 for Christmas dinner. I am hoping its a good food day, but at least I am still here alive and kicking raring to go.

Early January brings my long awaited appointment with my oncologist Dr Sen at Leeds Cancer centre, strangle to say I am really looking forward to seeing him. He wants to see me every January until we reach the magic 5 years. I know many of you stress when it comes to ENT appointments, maybe I am a lucky one as I don’t stress at all, in fact I look forward to a quick chat normally with Mr Gunasecker at my local hospital.

I have stopped acupuncture sessions for now, I have had 6 in total and I do think they have helped my saliva, ok it’s not normal but it’s no longer as thick and sticky as it was. Jo my acupuncturist always said 4 and see how it goes I think I’ve probably gone as far as I can for now with it.

I don’t take any medication apart from one amolodapine tablets which I took prior to treatment, and 10 mg of omaprozole for acid reflux which is a well known side effect of our treatment. I still tire easily, a 20 minute nap around lunchtime sorts me out. Most days I can walk to our shops a feat I couldn’t do last year, plus I have been lucky with my cycling I can bike a good 55 /60 km which both John and I are pleased with. Sleeping is no problem I regularly get 8/9 hours solid sleep. Reading has come back to me and I can potter in the garden, knit and crochet so all in all everything going great.

Things aren’t perfect, my mouth can go as dry as a bone for no apparent reason, I still can’t drink tap water so it’s bottled water every day. For some reason I don’t get a runny nose the nasal mucus seems to gather at the back of my throat, although I can sneeze, strange but true. I still miss most fruits, ok I can do bananas, bananas are so boring ! Much to Johns chagrin my body thermostats not quite right as far as the cold goes, so I turn the thermostat up he turns it down ! My gums are receding quicker than I thought they would, our dentist Amita is keeping a close eye on them. Last week I needed a small filling first one in years, my oral hygiene is excellent the dentist says, but it’s a side effect of dry mouth no mattter what I do it’s inevitable that I may need more dental work, but will handle that as and when.

Thinking back to last Christmas I compared my mouth when waking to be like having superglue in it, so I suppose progress can be measured by now when I wake it’s like having the glue we used as children just gloopy, here’s to next Christmas being almost normal. I do know I will never have 100% saliva due to my uvula ( dangly bit at back of throat )melting during treatment, which also acts as a saliva gland shooting saliva down the throat when we talk,and yes I talk a lot !

No matter where you are in treatment, just look at me and if I can do it anyone can .

I have come across a very informative website defiantly worth a look.

Plus a friend who I have made on the Macmillan site has her own blog about her brush with base of the tongue cancer

Onwards and upwards.

Yes I’ve had my hair cut ,it was looking scraggy so off it came.

It’s my life

Keeping in touch with the theme of song titles; as Bon Jovi sang Its my life it’s now or never, I ain’t going to live forever, I just want to live while I’am alive. Well I can say both John and I are almost back on track. We have just returned from latest trip to Spain and I did the final cycling challenge that I set myself back in the dark days of chemo radiotherapy.

We cycled from sea level over a mountain down to sea level and back up over the mountain down to sea level. Total of 66 kilometres with a stop for lunch so definitely living our life’s.

I am now November 2019,15 months post radiotherapy and still have periods of dry mouth and most days a quick 20 minute power nap.

Whats new: I am eating better, chicken has finally appeared on the menu which does help. I still can’t eat chicken breast but leg wing or thigh meat is ok, better with a gravy or sauce. Curries, chilli or anything spicy is still a step too far for my delicate mouth. Once again fresh mince no matter how fine, no matter which meat beef, pork, lamb or turkey still sticks, but anything processed like lasagne is perfectly fine, strange but true.

I have met and been in touch via my blog, Cancer U.K. or Macmillan sites lots of new friends and we all have our own idiosyncrasies so if you are reading this don’t think everything that I’ve been through will apply to you, some will and some won’t. I just hope I can continue to inspire fellow sufferers. Please don’t be afraid, I am a true wimp and if I can do it anyone can. I still repeat please keep off Dr Google the facts on there are not regulated and will scare you. Positive mental attitude got me through it and am sure it will help you.

A typical day for me if we are away is:

Breakfast usually porridge, fruit juice, herbal tea.

Cycle or Walk a few hours neither if which I could do much of a year ago now usually cycle at least 30 km or walk 10 km.

Lunch either tapas or if in and mouth feeling ok crackers and cheese!Definitely not eating those a year ago. When at home soup or scrambled eggs on toast.

Afternoons if away chill out and read, if at home try and garden plus do boring things housework included.

Tea again pretty boring but beats Ensures (lol) Fish, lamb (my favourite), pork usually with roast vegetables potatoes or lasagna. Rice is still beyond my palate.

Snacks very rare, I can manage a few plain crisps, a little chocolate, if I have a biscuit I must dunk in coffee.

Oral care is still a big part of my day. I can now use an electric toothbrush but still have my trusty curaprox ones at hand. I have been told duraphat toothpaste will be the only one I will be able to use for ever. Bioxtra mouthwash have tried others but all still too strong, plus inter dental toothbrushes to get any waste food from in between my teeth. I am on 3 monthly ENT appointments and visit my dentist every 3 months, both are very happy with how I am progressing.

I also pay privately for acupuncture for dry mouth, is it worth it? I think it is but you have to believe in alternative therapies.

Not everything is rosy.

It’s frustrating how one day or one week I can eat things perfectly fine then lo and behold the next week the same things just won’t go down! Our shopping bill has increased as some days I have to throw food away and cook something else. Likewise my body thermostat can’t cope with the cold as it used to, thankfully I can cope with temperatures comfortably up to 35 degrees. So once again our heating bills have increased. Ok it’s a small price to pay to be alive, but it’s all the little hidden things that soon mount up.

Loss of my uvulva.

For those who missed that in an earlier blog I didn’t discover until a year post treatment that mine had shrunk to a stump, as it accounted for producing copious amounts of serous thin saliva which I won’t ever regain. All I can do is try and encourage my remaining saliva glands to make more. Hence the copious amounts of water I still consume.

Explanation of what the Uvulva does.

Function: During swallowing, the soft palate and the uvulva move together to close off the nasopharynx and prevent food from entering the nasal cavity. It also produces an abundant amount of thin saliva which serves to keep the throat lubricated. It has a function in speech as well, so I will never be able to roll my rrrrrs, no big loss.There is one plus point I can never keep John awake as I can no longer snore ! However John says I still make noises which keep him awake.

When I reflect back to this time last year I have come a long long way eating wise plus I can enjoy a cup of coffee now. Personally I haven’t had the inclination to try alcohol, I was never a big drinker so no loss there. Some of the people who have been through treatment with me are now able to enjoy a drink every now and then.

Nighttime: Now I regularly get over 7 hours solid sleep, I still use 1/2 a xyimelts every night; (The mouth ulcer company ) online they really do work for me, yes you need some saliva for them to do so.

Medication: Now i take one omaprozole for acid reflux my usual blood pressure tablets, plus the occasional paracetamol.

To anyone starting this treatment it’s hard, recovery time varies, not one person who has been in contact with me felt anything like normal in the 2 weeks that all the consultants seem to advocate. But we all get there, some just take longer than others. I was lucky John sort of bullied me into our first trip back to Spain in October 2018, which I admit wasn’t easy but it did do me a world of good, leaving the bubble of my secure home environment.

My hospital visits are for the next 2 years every 3 months or so, the pressures on our NHS are such that sometimes I have to go a few weeks longer. A question that a lot of people ask me is do I get anxious before each appointment. I reply NO from day 1 of meeting Dr Sen. My oncologist I had every confidence that the treatment would work and the cancer would go and I still carry that attitude with me. People say to look at me now they would never know what I went through last year. The only onward difference is I go everywhere with my water bottle, and if you look closely at my neck where the enlarged lymph node was the telangiectasia is visible. Dr Sen did warn me that I would have a permanent reminder of him every time I looked in the mirror. It doesn’t bother me in the slightest, I know a few people stare and wonder what the marks are, so I tell them !

Ps. still no teenage snogs, everything else back to normal. Maybe I will get one for Christmas! Better look for some mistletoe.

Pretty Good Year.

As Tori Amos sang, it was a pretty good year and it was; as I am still here!

It was exactly one year ago when I had my last session of Radiotherapy, as you can see from the photos below I’ve come through it pretty well unscathed.

Yes I still have issues with dry mouth and sticky saliva, meat especially chicken is still difficult and oral thrush still plagues me due to lack of saliva, but all the above are better than the alternative.

The top photo is a no holds barred shot of how I looked at my worst the 3rd photo was taken in our garden this week. So to all of your reading this I’ve put them in to show you there is light at the end of the tunnel.

One of my worst fears that I voiced at the beginning of my blog the night before treatment started was I was scared would I still be me Hazel, would I change. I think this fear is a rational one and one that most of you will have thought it as well. I can categorically state in my case I am still me! Not a new me! Not a different me. I am still me. I think John and rest of our family hopefully agree with me. I haven’t gone morose, soft or anything I am still me, sometimes a demanding pain in the neck yep that’s me. John described me this way “you still want to do everything you did before cancer, things that might be problematic are an annoyance and are not to be accepted for ever”.

Quick update medical wise, 10 days ago I finally got to see the back of my throat! All swelling had gone and with some manipulation of my tongue I could see the back of my throat biopsy site but something was missing! I called John and asked him to open his mouth and then look into mine. As I thought my clacker or dangly bit or to give it it’s medical name Palatine Uvula had dissolved. So a little bit of Dr Google (advice still applies, keep off it for diagnosis) I got an answer as to why my throat is drying out when I speak. Like most of you reading this I had no idea what it did! Well it’s the source of thin saliva that is directed to our throats when we speak, plus it helps to move food down the throat. Umm no amount of acupuncture’s going to restore that, so now I know what I am dealing with it’s just a case of I have to get in with it. What I do want to know though at my next appointment with hopefully Mr Gunnaaseca is why haven’t I been told that it had melted!

My weight is stable at just under 10 stone, eating wise as long as I plan I can manage pretty much most meals (but not spicy). The main difference is food rarely gives me any pleasure, it’s rare that I say after a meal that I enjoyed it. I still from time to time have to have water to get things down, I can drink a can of pop, rarely coke, sometimes Fanta Orange, using a straw is much better than drinking from the can or a glass. I still haven’t touched a drop of alchol for no other reason other than I rarely drunk previously and have no desire to stress my mouth out any more.

What do I miss? Its the little things, making a sandwich and nibbling on a bit of meat or cheese, if I forget and try it’s deffo reach for the water quickly. A nice bacon sandwich but nope the bread combined with bacon is just a step too far, crisps I adored a packet of Walkers plain, nothing fancy, ok I can eat them but the time it takes and the suffering in my mouth it’s not worth it.

Friends we’ve made some great ones through my cancer diagnosis there’s a small tightly knit band of us that regularly keep in touch. 3 of us plus other half’s meet up for food and a chat, our next meet will be just prior to Christmas. Its good to have what we call cancer buddies as we exchange tips and compare notes, plus John gets to find out from their wives point of views, I throughly recommend to anyone starting this journey don’t wrap yourself in a bubble, as you all know me by now I am not a shy retiring wallflower even through treatment I was the chatty one, ok I knew when people didn’t want to and respected that but Neil and Jo along with Jason and Michelle were happy to chat and we’ve gone from there.


Curaprox soft toothbrushes invaluable for keeping teeth clean.

Duraphat toothpaste on dental prescription.

Buy a humidifier especially for night time mine was a Cool Mist from Amazon.

Your hospital should loan you a nebuliser you can use plain boiled water as well as saline.

Drink as much water as you can it really is vital keep a daily check of how much you are drinking especially later in treatment and first weeks of recovery alongside keeping a track of calories aim for 2000/2500 a day easier said than done.

Most if all keep a smile and a positive mental attitude, if I can do it honestly anyone can.

Please keep in touch if anyone wants any advice I am only too pleased to help.

To John, Nicola, Mel, James and all our extended family and friends too numerous to mention not forgetting all the NHS staff thank you once again.